Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Heidi, The VNS was not successful for (my son), but I don't regret it at all. As you know (at least it sounds like it), there are so many side effects of all these drugs, some of which are really bad, that when you compare it to the side effects of the VNS and risks involved, the VNS seemed to be a good option. We currently have it turned off (VNS) but have the option to turn it on again if we want. It did not provide any seizure control, although I researched it thoroughly before having it done. The people that had it done all had good things to say about it. The biggest risk is the surgery which was not invasive at all. My son was in the hospital for one day and it healed up very fast. He was not in pain much at all, and really for a lot of kids its an outpatient procedure, but because of the Mito he stayed overnight. Again, to me, if it didn't work, it was worth it because I was and am so tired of the drugs. The worse thing that ever happened while it was on was that you could hear his voice "gurgle" when he squealed (he is non verbal). To me, it was worth it and I don't regret it, just wish it was the miracle for my son. Hope this helps! Let me know if there is anything else I can do or questions I can answer. Heidi Harmon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Heidi, The VNS was not successful for (my son), but I don't regret it at all. As you know (at least it sounds like it), there are so many side effects of all these drugs, some of which are really bad, that when you compare it to the side effects of the VNS and risks involved, the VNS seemed to be a good option. We currently have it turned off (VNS) but have the option to turn it on again if we want. It did not provide any seizure control, although I researched it thoroughly before having it done. The people that had it done all had good things to say about it. The biggest risk is the surgery which was not invasive at all. My son was in the hospital for one day and it healed up very fast. He was not in pain much at all, and really for a lot of kids its an outpatient procedure, but because of the Mito he stayed overnight. Again, to me, if it didn't work, it was worth it because I was and am so tired of the drugs. The worse thing that ever happened while it was on was that you could hear his voice "gurgle" when he squealed (he is non verbal). To me, it was worth it and I don't regret it, just wish it was the miracle for my son. Hope this helps! Let me know if there is anything else I can do or questions I can answer. Heidi Harmon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Heidi, The VNS was not successful for (my son), but I don't regret it at all. As you know (at least it sounds like it), there are so many side effects of all these drugs, some of which are really bad, that when you compare it to the side effects of the VNS and risks involved, the VNS seemed to be a good option. We currently have it turned off (VNS) but have the option to turn it on again if we want. It did not provide any seizure control, although I researched it thoroughly before having it done. The people that had it done all had good things to say about it. The biggest risk is the surgery which was not invasive at all. My son was in the hospital for one day and it healed up very fast. He was not in pain much at all, and really for a lot of kids its an outpatient procedure, but because of the Mito he stayed overnight. Again, to me, if it didn't work, it was worth it because I was and am so tired of the drugs. The worse thing that ever happened while it was on was that you could hear his voice "gurgle" when he squealed (he is non verbal). To me, it was worth it and I don't regret it, just wish it was the miracle for my son. Hope this helps! Let me know if there is anything else I can do or questions I can answer. Heidi Harmon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 i know i am probally a little late in this reply, sorry non working computer. Hailee has had her vns stim since oct. I love it, no we dont have seizure control infact she is having more, but her brain activity has cleared up so much that she is functioning much more, she was having so much seizure activity that we couldnt see that she wasnt able to function, yes she still has her dailys but we have gone 3 months with out a grand mal, weve had to upp her meds due to all of the other activity but she is learning to talk and doing things we never though possible all since the vns. we love it in that respect >From: bzyheidi1@... >Reply-To: Mito >To: Mito >Subject: Re: VNS >Date: Mon, 15 Mar 2004 22:56:09 EST > >Heidi, >The VNS was not successful for (my son), but I don't regret it at >all. >As you know (at least it sounds like it), there are so many side effects of >all these drugs, some of which are really bad, that when you compare it to >the >side effects of the VNS and risks involved, the VNS seemed to be a good >option. We currently have it turned off (VNS) but have the option to turn >it on >again if we want. It did not provide any seizure control, although I >researched it >thoroughly before having it done. The people that had it done all had good >things to say about it. The biggest risk is the surgery which was not >invasive >at all. My son was in the hospital for one day and it healed up very fast. >He >was not in pain much at all, and really for a lot of kids its an outpatient >procedure, but because of the Mito he stayed overnight. Again, to me, if it >didn't work, it was worth it because I was and am so tired of the drugs. >The worse >thing that ever happened while it was on was that you could hear his voice > " gurgle " when he squealed (he is non verbal). To me, it was worth it and I >don't >regret it, just wish it was the miracle for my son. Hope this helps! Let me >know if there is anything else I can do or questions I can answer. > >Heidi Harmon _________________________________________________________________ Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 i know i am probally a little late in this reply, sorry non working computer. Hailee has had her vns stim since oct. I love it, no we dont have seizure control infact she is having more, but her brain activity has cleared up so much that she is functioning much more, she was having so much seizure activity that we couldnt see that she wasnt able to function, yes she still has her dailys but we have gone 3 months with out a grand mal, weve had to upp her meds due to all of the other activity but she is learning to talk and doing things we never though possible all since the vns. we love it in that respect >From: bzyheidi1@... >Reply-To: Mito >To: Mito >Subject: Re: VNS >Date: Mon, 15 Mar 2004 22:56:09 EST > >Heidi, >The VNS was not successful for (my son), but I don't regret it at >all. >As you know (at least it sounds like it), there are so many side effects of >all these drugs, some of which are really bad, that when you compare it to >the >side effects of the VNS and risks involved, the VNS seemed to be a good >option. We currently have it turned off (VNS) but have the option to turn >it on >again if we want. It did not provide any seizure control, although I >researched it >thoroughly before having it done. The people that had it done all had good >things to say about it. The biggest risk is the surgery which was not >invasive >at all. My son was in the hospital for one day and it healed up very fast. >He >was not in pain much at all, and really for a lot of kids its an outpatient >procedure, but because of the Mito he stayed overnight. Again, to me, if it >didn't work, it was worth it because I was and am so tired of the drugs. >The worse >thing that ever happened while it was on was that you could hear his voice > " gurgle " when he squealed (he is non verbal). To me, it was worth it and I >don't >regret it, just wish it was the miracle for my son. Hope this helps! Let me >know if there is anything else I can do or questions I can answer. > >Heidi Harmon _________________________________________________________________ Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 i know i am probally a little late in this reply, sorry non working computer. Hailee has had her vns stim since oct. I love it, no we dont have seizure control infact she is having more, but her brain activity has cleared up so much that she is functioning much more, she was having so much seizure activity that we couldnt see that she wasnt able to function, yes she still has her dailys but we have gone 3 months with out a grand mal, weve had to upp her meds due to all of the other activity but she is learning to talk and doing things we never though possible all since the vns. we love it in that respect >From: bzyheidi1@... >Reply-To: Mito >To: Mito >Subject: Re: VNS >Date: Mon, 15 Mar 2004 22:56:09 EST > >Heidi, >The VNS was not successful for (my son), but I don't regret it at >all. >As you know (at least it sounds like it), there are so many side effects of >all these drugs, some of which are really bad, that when you compare it to >the >side effects of the VNS and risks involved, the VNS seemed to be a good >option. We currently have it turned off (VNS) but have the option to turn >it on >again if we want. It did not provide any seizure control, although I >researched it >thoroughly before having it done. The people that had it done all had good >things to say about it. The biggest risk is the surgery which was not >invasive >at all. My son was in the hospital for one day and it healed up very fast. >He >was not in pain much at all, and really for a lot of kids its an outpatient >procedure, but because of the Mito he stayed overnight. Again, to me, if it >didn't work, it was worth it because I was and am so tired of the drugs. >The worse >thing that ever happened while it was on was that you could hear his voice > " gurgle " when he squealed (he is non verbal). To me, it was worth it and I >don't >regret it, just wish it was the miracle for my son. Hope this helps! Let me >know if there is anything else I can do or questions I can answer. > >Heidi Harmon _________________________________________________________________ Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 My daughter had her first ever siezure a few weeks ago when the psych doc put her on Lexapro. She started having all these muscle spasms and really agitated and had at least one petit mal that I personally observed, possibly more since these morons never monitored her or listened to me and kept giving her the stuff, then gave her ativan "for anxiety" supposedly caused by the lexapro, to which she then had a paradoxical reaction and became even more hyper and agitated. And they sent her home that way. I took her off all that stuff and let her come down to normal. But since siezures go with mito, I guess I have to watch her closely now. I had hoped we would miss that part. Now I can only hope it was just a med reaction. kj mom of D age 16 complex 3 (and 2others lesser) Quote Link to comment Share on other sites More sharing options...
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